We are Cavernoma Alliance UK
Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
In this video, hear clinicians and members talking about their experiences of cavernoma.
What our members say...
A world without CAUK doesn’t bear thinking about!
We are delighted to be sharing the results from our recent member survey. We are continually working to improve the information and resources we provide so we are extremely grateful and pleased with the feedback we have received. This year has been challenging for everyone and we are so happy that we were able to offer much needed support for our members during this difficult time.
Fiona Holiday – The Elephant and The Thinking Brain – Emotions, Experiences and Well-Being (March 16 2021)
What we think, how we feel and how we relate to other are driven by the way our brains, bodies and minds work together. During this session, CAUK therapist Fiona will explor ehow our brains and bodies search for safety and respond to danger. We’ll talk about emotions and stress and what happens when we feel overwhelmed by danger and experience trauma.
Ian Kamaly-Asl – The Implications of Screening for Cavernous Malformations and Risk with Activities for Patients with Cavernous Malformations
Doctor Ian Kamaly discusses what options there are for screening of both patients with known cavernous malformations and family members who may possibly be affected. He then went on to give a very useful discussion on participation in sport and other activities for patients with known cavernous malformations.
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for